Writing this blog together, as husband and wife, seemed appropriate since the focus extends itself beyond our immediate family, stretching its reach to those of you who surround us. Extending to those of you who see us everyday and to those who we have yet to meet. We know there are so many people out there who are following our story--who are a part of our story.
The highs and lows that we experience are often absorbed by you. We understand that we are not the only ones who are suffering at the hands of Ella's SMA. We appreciate your goodwill and compassion. We understand your feelings of helplessness. People have expressed in numerous ways their desire to help; "How can I help?", "What can we do now for you?", "What do you need?" are questions we hear often.
Believe it or not, those questions are not easily answered. One might think in a situation such as this that we would be able to articulate our needs. Not so. We wish we could do so more easily; more readily. Our needs, the needs of our family, are deeply rooted in several areas...just like any other family.
The fact remains that we do need help. This help, however, is going to be needed on different fronts--namely emotional, spiritual, social, physical, and financial.
Looking at each one:
- Emotional Support: Knowing that people are there for us to talk with is invaluable. For the past three months the sole focus in our minds has been SMA. We have come to realize that we cannot constantly think about SMA and what it's doing to our family...we have to have emotional breaks. There are other parts of life that need our emotional attention. Often times we find the person whom we feel we want to talk with and take it from there. Other times we simply are running on overload and cannot talk about it. It's never anything personal, it is simply when and where we find ourselves.
- Spiritual Support: We have found that our church (St. Timothy Lutheran Church) has become instrumental in our lives. We are being drawn closer to God, closer to the members of our congregation, and closer to each other. As Christ put it so eloquently, "For where two or three are gathered in my name, there I am in the midst of them." (Matthew 18:20). We are finding that the thoughts and prayers that so many are offering truly provide us with great comfort. This is so important to us for it speaks directly to Him, who is in control.
- Social Support: While SMA has been thrust upon us, it is not healthy for it to be all-consuming. We would simply be crushed under the weight of it as it takes over our life. Our family still needs to go out, be with friends, and be treated as any other family. All families have stress, all families have "issues" and "situations" that need attention. We are a family that happens to have a child with a terminal disease...this does not define us...it simply presents us (and those we know) with a different set of challenges. We are slowly rekindling the need and desire to once again connect with our friends as we did before the diagnosis came in. When our time is not as easily available as it once was, it's truly not personal...but we do miss you.
- Physical Support: A hug goes a long way.
- Financial Support: Of all the support types, this one is a difficult one for us to address. Finances are a personal thing and the pride associated with providing for one's own family runs deep in our society. That being said, we know that we are going to need financial help. What that will look like we really do not know. We do know that when the time comes and we need some serious financial help we will ask those who have indicated that they will help us in that capacity. Currently there are people who are putting together fundraisers for Ella...the funds raised from these will help tremendously in what we forecast we need to accomplish (home modifications or new house, special equipment, daily activity equipment, etc). The tricky thing about SMA is that each patient is different...the needs for one patient may look quite different than the needs for another patient with the same diagnosis.
One thing that rings true...whenever we are asked for "what we need" and we are unable to articulate an answer, we want all to know that we rely so much on your thoughts and prayers; for Ella, for us, for the many children and families affected by SMA. Each one of you has already made a mark on our lives...you have truly helped us in ways that you may not even realize.
We thank you from the bottom of our hearts.
With love,
Michael, Lindsay, Ava, Henry, & Ella
